Learn more about rare diseases at the Mount Alvernia Hospital’s community carnival in aid of the Rare Disease Fund at Punggol Town Square.
In support of the Rare Disease Fund, Mount Alvernia Hospital is organising a community carnival to raise awareness of rare diseases and help raise funds for the Rare Disease Fund, a charity fund administered by the KK Women’s and Children’s Hospital.
The free event will be held at the Punggol Town Square on Nov 3 from 8.30am to 2pm, and graced by the guest-of-honour, Senior Minister of State for Law and Health, Mr Edwin Tong.
There are loads of activities for young and old, from a children’s colouring contest and magic show, to interactive games and booths and performances. Join the mass tai chi session, take a selfie with Sharity Elephant, and listen to patients with rare diseases share their stories.
So, bring the whole family down for a day of fun for this good cause!
What are rare diseases?
A rare disease is one that affects fewer than one in 2,000 patients. Many are fatal. Most rare diseases are genetic, directly caused by changes in genes or chromosomes that affect the body’s ability to produce enzymes or biochemicals needed for it to function normally.
Rare diseases can affect people of all ages but they are often diagnosed at birth or during early childhood. Without treatment, most conditions can be life threatening. About one-third of patients with rare diseases globally do not live beyond five years old.
There are no treatments available for most rare diseases. But for a few, effective medicines are available which can replace the missing enzymes or biochemicals. In such cases, with early treatment, patients’ lifespans and quality of life will be greatly improved, allowing them to live relatively normal lives.
The medicines usually have to be taken for the patients’ entire lives and can be very expensive. This places a heavy financial burden on the patients and their families.
Did you know?*
- There are more than 7,000 rare diseases globally.
- 80 per cent of rare diseases have genetic origins and are present for the patient’s entire life.
- Symptoms begin in infancy or childhood in 50 per cent of rare diseases.
- Effective treatments are only available for about 5 per cent of rare diseases.
- 30 per cent of children will die before their fifth birthday unless early treatment is given.
- Some 2,000 to 3,000 people are estimated to have a rare disease in Singapore – and about 700 of them are children.
Some medicines can cost each patient more than $200,000 a year. Some people will need these medicines for life, which is a significant financial burden. Funding support eases the financial stress on patients and their families.
Click here for more information on the Community Day event.
Donors may donate online via the Community Chest online page tiny.cc/mahrdf2019 . You may also scan the QR code below .
— Brought to you by Mount Alvernia Hospital —